Self-help Toolkit to navigate the world of Olfactory Disorders
SVASA
2023
ABOUT THIS PROJECT
SVASA addresses the unmet needs of individuals living with olfactory disorders (OD) in India. Using design thinking principles and healthcare advocacy, it aims to raise awareness, provide support, and destigmatise OD. The core intervention is the development of interactive cards, serving as a tool for sensory engagement, emotional connection, habit-building, and community support. Ultimately, SVASA strives to create a compassionate and inclusive healthcare environment for individuals with OD in India.
PROJECT BRIEF
To design a service toolkit for healthcare facilities in India to educate and support individuals with OD in adapting to lifestyle changes.
PROJECT PROPOSAL
Providing comprehensive multi-faceted intervention that provides awareness, education, and specialised support for those with OD impairments in India. Additionally, we would be creating a behaviour change in society's mindset regarding invisible disorders.
This research project utilised a lateral thinking methodology, combining a mixed-methods approach of the Double Diamond and Humanisation of the Healthcare Framework to ensure a holistic understanding of the complexities related to OD and the healthcare system's response to it.
PLANNING OF THE PROJECT
UNDERSTANDING THE DISORDER
The mindmap helped contextualise the scale of the project by examining the interplay between OD and various socio-cultural aspects prevalent in India. This comprehensive approach facilitated a deeper understanding of how OD intersects with different facets of life in the country, including cultural beliefs, social norms, healthcare practices, and accessibility challenges.
Mind Map developed for OD as a starting point
RESEARCH AND LEARNINGS
ETHNOGRAPHIC
RESEARCH
Victoria ENT Speciality Hospital in Bangalore is also a Primary Healthcare Centre (PHC), offering its services to patients under the "Ayushman Bharat Program," an initiative by the Indian government aimed at assisting individuals from tier 2, 3 cities, and rural areas with health insurance coverage. Dr Arvind extended his invitation to the hospital premises as part of the interview with the doctors. He facilitated a walkthrough within the premises to assess the extent of customer experience, particularly concerning the handling of patients with subtlety and empathy.
Wayfinding and Customer Experience at Victoria Hospital, Bangalore
PERSONA ARCHETYPES
Various techniques, including interviews, observations, and body-storming workshops, were employed to gain a comprehensive understanding of the problems faced by the stakeholders. Through these interactions, it was aimed to understand the nuanced details of the challenges embedded within the ecosystem. From engaging conversations to firsthand observations during immersive hospital visits, the most important stakeholders to work with were identified.
Persona Archetypes of the Stakeholders
Voices of Resilience 🎤
The workshop was meticulously designed to provide a platform for participants to candidly share their encounters within hospital and specialist environments. Divided into three engaging segments, the session aimed to empower individuals to articulate their experiences using the universal language of imagery.
With cups of coffee in hand and hearts open to conversation, the conversation flowed, and laughter mingled with moments, creating shared experiences and mutual understanding. Through shared stories and supportive gestures, they found strength in community and hope for the future.
Body-storming Workshop with the Patients
JOURNEYS AND SENTIMENT
Semi-structured interviews were conducted with stakeholders representing various persona archetypes. Subsequently, a Customer Journey Map was crafted to conduct a Sentiment Analysis. Findings revealed widespread frustration, with over 90% expressing discontentment towards the lack of intervention for invisible disorders, especially OD. This highlights the urgent need for targeted interventions and increased awareness within the healthcare landscape.
Customer Journey Map of the Diagnosis Process of OD
After diving into the interview transcripts, Sentiment Analysis was conducted to uncover the overall emotions experienced by our participants! 🎢✨
Overall Emotions of the participants identified through sentiment analysis
THEMES AND SYSTEMS PLANNING
UNDERSTANDING THE SYSTEM
From the interactions with the stakeholders through interviews, workshops & observation, a map of the current system was plotted to identify the major parties involved in the problem space and the gaps to be fixed. This helped in understanding the intervention space.
Map of the current system of PHCs in India
INTERVENTION SPACE
We pinpointed the gaps in the current healthcare system by comparing its flow with the ideal scenario. By identifying the main service flows, we zeroed in on the intervention space – the sweet spot where change is needed most.
Identified intervention space for PHCs in India
How might we equip primary healthcare centres in India with a service toolkit to educate and support individuals with olfactory disorders in adapting to lifestyle changes?
BREAKDOWN OF THE PROBLEMS
Lack of Information ℹ️
Patients and care-takers are provided limited information. The information when provided are too technical for a commoner to understand the technical terms.
Lack of Care and Support 🩺
The patient experienced significant post-diagnosis gaps in care and information for adapting to life with OD. The lack of guidance and support left the patient frustrated and anxious.
Lack of Policies 🧑🏻⚖️
The policies catering to the rights of people with hidden disability are very fragile. Hidden disability is not recognised as a disability.
Lack of Awareness 🎗️
The fear of disclosure and concern about societal perceptions were evident, leading to delays in seeking help and support.
Meet SVASA
/ˈsvɑːsə/ spelled “svuh-suh”
SVASA is a toolkit designed to aid healthcare facilities in providing care and support to patients diagnosed with OD, both during and after diagnosis. It also aims to empower society by creating a fostering environment for the patients, helping them navigate their everyday lives by educating society about the disorder and providing care and empathy in a community.
WHAT'S IN THE TOOLKIT?
The toolkit comprises ‘Therapy Cards’, a set of 27 cards organised into four weeks, with seven information cards and 20 action cards. The action cards have two sides, ‘learn and reflect’. The ‘Learn’ side helps patients understand and practice neuroplasticity activities to cope with life as a person with OD. In contrast, the ‘Reflect’ side helps them process their emotions safely without hurting themselves or others. ENT specialists can usually provide these cards before suggesting smell therapy to remove apprehensions and give them confidence in therapy.
Research behind SVASA
Through collaboration with ENT surgeons and Occupational Therapists, it was identified that Smell Therapy is a promising approach for diagnosed patients. Utilising the concept of Neuroplasticity, these therapy cards aim to provide patients with a tangible tool to engage in therapy sessions. Beyond treatment, the goal is to challenge societal taboos surrounding invisible disorders and mental health.
NAVIGATING OLFACTION ONE WEEK AT A TIME
"As a healthcare professional, I appreciate your project for empowering individuals with OD to redefine their lives and embrace the disorder. The positive impact that SVASA extends beyond enhancing the experience of individuals is very commendable"
- ENT Surgeon & Occupational Therapist, India
This is an ongoing research project. To learn more about it, please connect with me 😀
BEYOND SVASA
FUTURE SPACE
The future of the SVASA project holds immense promise. The project can be expanded to make it more inclusive and cover more bases. The emphasis on habit-building and emotional connection aims to cultivate long-term changes in how individuals with OD perceive and navigate their world.
In summary, the scalability ideas for SVASA go beyond the initial toolkit into a social change model. It envisions a holistic approach to addressing invisible disorders.
LEARNINGS FROM THE PROJECT
1. Understanding the Importance of Holistic Solutions
Addressing complex societal challenges such as olfactory disorders requires holistic solutions that consider not only medical interventions but also societal attitudes, legislative frameworks, and individual empowerment.
2. Advocacy and Empowerment
The project highlighted the importance of advocacy and empowerment in challenging societal norms and stigma surrounding invisible disabilities.
3. Focus on Long-Term Impact
While immediate interventions are essential, focusing on long-term impact is equally important. Solutions should aim not only to address immediate needs but also to create lasting societal change and empower individuals to lead fulfilling lives despite their health challenges.